What is a Patient Registry?

What is a Patient Registry?  
Patient registries have been defined as “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s).   

In other words, a patient registry is a collection—for one or more purposes—of standardized information about a group of patients who share a condition or experience.  

Why are Patient Registries Important? 
Data is empowering. Quality patient data is inspiring.
The purposes for patient registries will vary greatly. According to the National Institutes of Health…Registries: 

  • Can be used to recruit patients for clinical trials to learn about a particular disease or condition;  
  • Provide data to develop therapeutics or to learn about population behavior patterns and their association with disease development;
  • Help develop research hypotheses;
  • Support the enhancement and facilitation of quality health care.


Patient registries can also be used to monitor outcomes and study best practices in care or treatment
 of patients. They may pursue a specific, focused research agenda, collecting data for a limited time to answer a specific research question (or questions), or may collect data on an indefinite basis to answer a variety of existing and emerging research questions. 

Patient registries have traditionally been researcher-generated. Research institutions, academic clinical institutions, or individual research teams establish a registry, using private or Federal funds, for the purpose of observational data collection that can be used for a specific research agenda. These registries may be organized and operated in a variety of forms and formats. They may be operated by a single institution or by a collaborative of multiple institutions or clinics. Researcher-generated patient registries currently exist for a wide range of chronic or rare conditions, including many forms of cancer, diabetes, cystic fibrosis, acute coronary syndrome, and arthritis. 

How Can a Reliable Registry Impact Patients?
Well, as you have seen in the aforementioned information…Patient registries are a critical resource for clinicians and researchers alike when faced with the desire and responsibility to provide quality care.  

Having reliable, relevant data when creating their care plans and associated therapies, enhances clinical effectiveness and frankly, much better results for Patients.